Open Letter to Chief Medical Officer by Invest in ME (UK)

As you know Invest in ME is a UK charity that was created by families of children with ME or persons who suffer from ME themselves and who were appalled and frustrated at the lack of action from government, departments of health, healthcare organisations, charities and individuals – all purporting to service or represent people with ME yet seemingly doing little or nothing.

They indicate that a seat has been reserved for the Chief Medical Officer at the International ME/CFS conference in Westminster, London later this month despite a lack of engagement from the government over the past 4 years.

image by sunside on flickr

A summary of concerns raised and points made:

“Despite inviting you to speak at our conferences or attend as our guest you have declined on every occasion … … A petition was recently raised by people with ME asking you to attend this year… Invest in ME have reserved a seat for you at this year’s conference in anticipation of your response.”

“[making] ME a notifiable illness within schools due to it being the greatest cause of long-term absence through sickness from school for children and teachers”

“[refusal] to visit the Whittemore-Peterson Institute for Neuro Immune Diseases (WPI) in Nevada, USA. This is a centre which performs biomedical research into ME. It is considered by many in the UK and abroad as the model for any research and treatment facility to find treatments and a cure for ME. “

“we again ask that you reflect on them [the main issues] and how a lack of action is affecting millions of lives – of young people, of families, of chronically ill people. Yet it has been obvious that there is little intention by the establishment of doing anything to help people with ME.”

“At last year’s conference your representative would have heard (if he had stayed long enough) of the effective treatment of a subset of ME patients … using antivirals … What is the difference between an illness which is yet to cause substantial harm to the population and an illness which has been causing major effect on millions of citizens of this country for decades? Surely if access to antiviral drugs is allowed for flu then it ought to be allowed for a major chronic illness.”

“We ask you again, on this day of awareness, to make an exception, cancel your plans and personally attend this major international conference, on 29th May, taking place a few hundred metres from your office.”

And finally

image by Erica Marshall on flickr

“On this day of awareness Invest in ME invite you to make a complete change in direction regarding ME and take on the role of champion of people with ME.

We invite you to make the treatment and eventual cure of ME your personal responsibility, something which no other government department or medical research organisation or vested interest can hijack or use for their own purposes.

On 29th May in Westminster, London, there is a seat reserved for you to listen to the latest, groundbreaking research being performed by the best researchers in the world. The conference discusses severe ME.

On this day of awareness Invest in ME invite you to make a difference, draw a line in the sand and advance the cause of progress for people with ME.